Against all odds, against all logic, we still hope!

And sometimes against all odds, against all logic, we still HOPE! Even though at times I get discouraged and I think why bother with therapies, why bother with medications, they're not helping Payten. I try to remember that nothing is impossible and I search for that HOPE that burns inside me, that tells me that just maybe Payten will be the exception, just maybe she will defy all odds and she will walk, talk, eat by mouth, etc and that keeps me going. Hope! It is the Hope of not pretending troubles exist, but rather the Hope that they will not last forever, that hurts will be healed and difficulties overcome! It is hope that strengthens our faith and it is faith that will help us to see that there lies within us a source of strength and renewal that will lead us out of the darkness and into the light! Never, ever give up! There is always hope, and with that hope, nothing is impossible!

 

I wrote these words down last night as they came to my mind, not because I have mastered the concept of hope or that I no longer struggle with discouragement, but rather to help remind me that hope is still there and I have the strength within me to force the negativity out and allow the hope to shine through. These words saved me last night. I needed so desperately to have them impressed upon my mind. I needed this simple reminder, to never give up, because nothing is impossible with God. And I am so very thankful to my Father in Heaven for impressing upon me these words of encouragement and hope!

 

These past few months have been tedious and I have hit rock bottom a few times and that is hard when you have a family to care for and children who need you. Payten's health has not been the best lately. It seems as though her health is declining and it scares me as well as upsets me, for I feel like I am slowly losing my daughter and no Mother wants to think those thoughts. Though it has been hard to watch and hard to deal with, these above words are a reminder to me that, no matter what Payten is going through, she is still here, living life and therefore there is always hope for a better tomorrow, ultimately a brighter future. I can not give up, even though the odds are stacked against her and the Logic is telling us it is hopeless, it's not! I can't give in to the negativity, for Payten is still alive and that is a miracle in itself and therefore I will try (I say that liberally) to remain hopeful! Until her fight is over, I promise to not give up, rather I promise to be her anchor, to be her strength and her hope, because if I give up, then she will too and I can't allow that!

 

Let me back up a little bit, for those of you who do not follow me on facebook and therefore do not know fully what has been happening with Payten, I will explain. For about a month or maybe a little longer, Payten's seizure activity has worsened. It started out a few times a week and now it has increased to multiple times a day. The silver lining is that they are petite seizures and they only last a minute or less, but with that still comes the prolonged postictal state and that is where it becomes heart wrenching. That is what I struggle handling. I feel like she is asleep more than she is awake and that is hard, because I want my daughter. I want her up and playing and doing things, not sleeping! But because of her increased seizure activity, we are not getting our happy, playful Payten, rather we are getting a sleepy, in her own little world, Payten and that breaks my heart. We have increased her medications and we have been in contact with her Neurologist and the game plan is to stick out this last increased dosage of medication a little longer to see if it does or doesn't get better. He says that it sometimes gets worse before it gets better. Well isn't that the truth about most things?! You have to go through the refiners fire before you come out that beautiful diamond! So, I am learning patience and I am sticking it out, to see if it is just time that is needed and not another dosage increase in order to get seizures controlled. 

 

This is not the only thing that has changed in Payten's health, Payten's GTP Cyclohydrolase Deficiency has worsened according to her last Lumbar Puncture. Her Neurotransmitter levels are at an all time low and this tells us that for whatever reason, her medication is not working. The Neurologist is at a loss, because he is doing everything he knows how to do and he does not understand why it is not improving, so he referred us to see a Doctor in Salt Lake City, Utah, who is Nationally ranked as the number one Doctor in dealing with children and the medication Senimet. Senimet is an adult medication, but it is the only medication that will work in Payten's case, so it is an extremely delicate situation, for you can not get the dosage wrong, because you do not want to over dose, but you can not under dose or the disease/metabolic disorder will progress and worsen. The doctor feels that she would be the best person to tell us what our next step is in helping Payten. So not only have the increasing seizures been weighing on my mind, but the fact that my daughters diagnosis is worsening and we need to go see another doctor because our doctor does not know what else to do, extremely hard to swallow. Emotionally drained would be an understatement. Words can not express the pain I am feeling regarding all of this. But, I need to remain hopeful that this doctor in Salt Lake City, will be able to help and that there will be great things in store for our sweet Payter Tater! 

 

All of this though, is not what sent me over the edge, it is not the whole reason I hit rock bottom a few times. On top of all this, I have been dealing with my son Zachary too. The last time I was on here, I shared with all of you that Zachary has Sensory Processing Disorder and we have been further investigating this finding to fully make sure that this was what it was and not something else or something else on top of the SPD. Along with Payten's lumbar puncture, was a lumbar puncture for Zachary. We did them at the same time for scheduling purposes, as well as convenience. Zachary had the lumbar puncture so that we could rule out any question that Zachary could be suffering from the same thing as Payten, GTP Cyclohydrolase Deficiency and though the results were in our favor with that, they still were not the best results. The findings of the lumbar puncture showed that one of Zachary's neurotransmitters is low and therefore not functioning properly. When I look up the neurotransmitter that is low, the first thing that pops up is the diagnosis of GTP Cyclohydrolase Deficiency, but we know he does not have that, because in order to have that, all your neurotransmitters have to be low and malfunctioning, which his are not. So that is a plus, but it still comes with it's disadvantages and challenges and no parent wants their child to be faced with any difficulties, especially when it comes to behavior and learning and that is exactly what he will struggle with and it breaks my heart. 

 

There are things that we can do to help Zachary through this, there is a vitamin supplement called tryptophan that we can try with him and we will continue to take Zachary to Occupational Therapy and if needs be we will start Cognitive Therapy and maybe Vision Therapy. These things should help him to cope with this metabolic disorder, no it will not fully fix it, but it can help and that is all we want. So, like I said before, I have been dealing with this knowledge as well as Payten's knowledge and it has weighed heavily on my mind to the point of not being able to stand life and all that is entails, but I am coming through. I am starting to see the Hope and the blessings and I am getting stronger and more faithful in believing, that nothing is impossible as long as I have God. I can do this, my kids can do this and it will all be okay!

 

Not only have the beginning words to this post helped me to come through this with a better perspective, but remembering the accomplishments that Payten and Zachary are still achieving even though Logic says otherwise and odds are stacked against them, has helped tremendously too. Seeing them defy the odds sometimes, gives me the most hope of all and I believe that is a blessing from my Father in Heaven. It is my Heavenly Father's simple way of reminding me that even though it is a hard road they have ahead of them and even though it does not look promising at times, there is still hope of a better tomorrow, hope of a brighter future!  Some of these things they are achieving or for Payten working on are, 

 

Payten

Standing and taking steps on her own. Her steps may be few and far in between, but they are steps none the less and that gives me hope that one day she may walk to me on her own! (with the help of a walker of course!)

 

And though it may get tedious and feel like a waste of time, we still hold onto that hope that anything is possible and therefore we move forward and get things that will help her in obtaining these goals we have set for her. Things such as,

A DMO garment (Dynamic Movement Orthosis) which constricts her muscles and sends signals to them, that say, Hey we are here, use us! And since she has received this garment, her posture, her sitting, her standing, her arm and hand usage, etc. have all improved tremendously! Now, if I just gave up and said, Why bother, for it is hopeless?, we would not have moved forward and gotten this wonderful garment that has opened up worlds of possibility for my Payten.

Another piece of equipment we got, because we have hope is,

AFO's these little beauties are for Payten's feet and legs, to help her stand and eventually walk! Again we got these to improve Payten's overall function and believe me, if I have anything to say or do about it, my daughter WILL walk! That is my hope and therefore I am determined to do anything and everything I can do to get there! Screw the odds and logic! We will succeed if it is at all possible! And if it's not possible, that is okay, at least I know I did everything I could do!

We do all these therapies and we get all these pieces of equipment, etc. to ultimately empower our daughter and to help her live the fullest possible life she can, with little to no limitations! We push her, because we believe in her! We push her so she can enjoy life, enjoy her family, and live happy!

These are the pictures that keep me going! These are the pictures that keep the hope burning bright within me! These are what makes all the hard work and effort, that sometimes feels tedious and pointless, worth doing! I want quality for my Payten, not quantity!

Now for Zachary, here are some things he has been doing and some things he has accomplished by doing so,

Zachary has been in Occupational Therapy for a little over 6 months now and he has worked extremely hard and he has surpassed expectations in a short amount of time. His therapist said the other day, that he has gone the farthest in the program and so it has made her have to study up on it more. The farthest, that is awesomeness right there! If that doesn't give hope, then I don't know what would! And because of this therapy things have improved such as,

His writing! Zachary's writing has improved drastically, as well as his letter reversals. This picture is the first time since Zachary started OT, that he was able to write all his letter's without one single reversal. That is huge! Now does this mean that he will never have another letter reversal again? Does this mean that it is completely fixed? No, but what it does mean, is there is hope! There is hope that he can and will be able to over come this and that makes my heart happy.

Some other things that have gotten better are,

Zachary's strength, ability, coordination and confidence! All things that are important for a young boy such as Zachary to have! He can now do things he could not do before and he has the confidence to do them and the confidence try new things, which is also HUGE! Does this mean he will be the all star athlete at his school, no! But what it does mean, is he will have a chance to be and that helps me to remain hopeful!

One of my favorite sayings is, Where there is no struggle, there is no strength. I love this saying because it reminds me that there needs to be trials, tribulations, hardship, heartache, etc. in order to become strong, in order to learn and grow and so it makes it easier to bare and it makes it easier to see my children bare these things too, because ultimately I know that in the end, they will come out being one of the greatest diamonds this world has ever seen!

So, with all this being said, I am going to start anew and I am going to try to keep these inspiring, heartfelt, hopeful words in mind and I will try to stay strong and keep chugging along, in hopes of a better tomorrow. Thank you for your love and support for me and my family and for always helping wherever you can, this too has helped me to stay strong and hopeful! Always try to remember that nothing is impossible with God and that where there is no struggle, there is no strength! We all fight a tough battle, may we all endure it with faith and hope and the knowledge that all things are possible, especially if it is God's will!

Those of you who follow this blog and try to stay up on Payten and our family, I want to sincerely apologize for not being better about blogging. I want to write more often, but I find that I just do not have to time to always do so and so I blog when I have that overwhelming feel that I just can't keep it in any longer. So please bare with me! I promise that I will do better in keeping up on here. Stay tuned because soon I will be blogging about the positive, happy events that happened over the summer and I will be doing a post of back to school tributes to Zachary and Makenna, so keeping checking in because sometime in the near future I will have those up on the blog! Thank you again for all your love and support, it truly means to the world to our family!